1. < Transplants

Transplant anti-rejection medications. What's your advice?

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Interested in more discussions like this? Go to the Transplants Support Group.

dflyfisherman | @dflyfisherman | Jun 21, 2021

When I found Connect, I was looking for info on the interaction of anti-rejection drugs solid organ transplant patients must take on Covid-19 vaccines. For example Johns Hopkins did a study that showed about half those with organ transplants showed no response to the Covid-19 vaccines. That is there was no antibody response.

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2 replies
Amanda Roe | @amandajro | Jun 20, 2021
In reply to @dflyfisherman "Tacrolimus can be toxic to the kidneys. My cardiologist switched Tac to Imuran in hopes of..." + (show)
@dflyfisherman

Tacrolimus can be toxic to the kidneys. My cardiologist switched Tac to Imuran in hopes of stabilizing the kidneys. Hear transplant in June, 2013.

Jump to this post

Hello @dflyfisherman and welcome to Mayo Clinic Connect. Thank you for joining the discussion and sharing your experience to help support other members.

Can you share what you were looking for when you found Connect?

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dflyfisherman | @dflyfisherman | Jun 20, 2021

Tacrolimus can be toxic to the kidneys. My cardiologist switched Tac to Imuran in hopes of stabilizing the kidneys. Hear transplant in June, 2013.

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2 replies
jerrynord | @jerrynord | Jun 19, 2021

I had a liver transplant in 2008. Been on Tacrolimus ever since with no side effects.

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athenalee | @athenalee | Jun 10, 2021
In reply to @benlam11 "I suggest you aim "higher" like on open air helicopter ride in Kawaii." + (show)
@benlam11

I suggest you aim "higher" like on open air helicopter ride in Kawaii.

Jump to this post

Thanks for the laugh! I hope you too aim high with your list!

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benlam11 | @benlam11 | Jun 9, 2021
In reply to @athenalee "Yes, now that Covid is declining, I do hope I can work on my bucket list..." + (show)
@athenalee

Yes, now that Covid is declining, I do hope I can work on my bucket list again. I’ll share a funny “list” story, although definitely not funny when it happened.

Taking a helicopter ride was always on my list. I had an endoscopy to check for varices in September 2019, shortly after being diagnosed with PBC and cirrhosis. The proctologist found several and tied them off. Unfortunately, in October they burst and I ended up Air EVAC’d to Dartmouth for emergency surgery. Sent home after a week in ICU, and it happened again. The first ride in the helicopter I was intubated and drugged. But the second time I was awake and got to peep through the little window the crew cleared for me. I got to see a spectacular view of the Connecticut River in fall colors.

Needless to say I’ve crossed helicopter riding off my list!

Jump to this post

I suggest you aim "higher" like on open air helicopter ride in Kawaii.

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1 reply
athenalee | @athenalee | Jun 9, 2021
In reply to @benlam11 "You will arrive at Your "New Normal" so keep working with your Transplant team and make..." + (show)
@benlam11

You will arrive at Your "New Normal" so keep working with your Transplant team and make sure you get there ASAP. I also take a boatload of Meds so keep a good discipline of Meds, exercise, even some "Quiet Time" to rest your mind. Keep at it and always look forward to something on your list.

Jump to this post

Yes, now that Covid is declining, I do hope I can work on my bucket list again. I’ll share a funny “list” story, although definitely not funny when it happened.

Taking a helicopter ride was always on my list. I had an endoscopy to check for varices in September 2019, shortly after being diagnosed with PBC and cirrhosis. The proctologist found several and tied them off. Unfortunately, in October they burst and I ended up Air EVAC’d to Dartmouth for emergency surgery. Sent home after a week in ICU, and it happened again. The first ride in the helicopter I was intubated and drugged. But the second time I was awake and got to peep through the little window the crew cleared for me. I got to see a spectacular view of the Connecticut River in fall colors.

Needless to say I’ve crossed helicopter riding off my list!

REPLY
1 reply
athenalee | @athenalee | Jun 9, 2021
In reply to @jerrynord "Sorry but I meant the level of Tacrolimus in your blood. Your dr must want it..." + (show)
@jerrynord

Sorry but I meant the level of Tacrolimus in your blood. Your dr must want it to be between a certain level.

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Yes, thank you. I have labs prior to seeing my transplant team. I don’t take Tacrolimus that morning so that it reflects the level in my blood. I’ve only been able to reduce it in April. My doctor’s previous attempts to do so resulted in my liver functions rising again.

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jerrynord | @jerrynord | Jun 9, 2021
In reply to @athenalee "Currently, 6 mg/day. I was reduced to that level in early April. I’m hoping to get..." + (show)
@athenalee

Currently, 6 mg/day. I was reduced to that level in early April. I’m hoping to get it reduced again at my next transplant visit in midJuly. I’m very strict on taking my meds at the same time and on an empty stomach for best metabolism. Fortunately, my stomach seems to handle this okay. My one year anniversary is August 20…very exciting!

Jump to this post

Sorry but I meant the level of Tacrolimus in your blood. Your dr must want it to be between a certain level.

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1 reply
benlam11 | @benlam11 | Jun 9, 2021
In reply to @athenalee "Thank you for your encouraging words. And, congratulations on your two year transplant anniversary! I hope..." + (show)
@athenalee

Thank you for your encouraging words. And, congratulations on your two year transplant anniversary! I hope you can continue to be well…with no more surgeries! I have been able to reduce Tac from 8 mg to 6 mg, but increased Mycophenolate to 2000 mg/day.

My transplant doctor doesn’t believe my increasing tremors and neuropathy are due to meds, however. So, I’m now seeing a neurologist and rheumatologist who believe my symptoms are due to Sjogren’s and possibly some other autoimmune response. Like you I’m dedicated to exercising, and I’m eating well and doing everything to keep my new liver healthy. I’ve also got pretty severe osteoporosis, so am now on meds for that.

I have my next appointment with my transplant team in July. I’m hoping I have more insights on my autoimmune issues by them so I can discuss potential impacts on my liver and treatments that don’t interfere with our anti rejection meds. I’m managing pain currently with Gabapentin. It seems like a lot of other meds recommended for neuropathy interact with Tacrolimus.

Jump to this post

You will arrive at Your "New Normal" so keep working with your Transplant team and make sure you get there ASAP. I also take a boatload of Meds so keep a good discipline of Meds, exercise, even some "Quiet Time" to rest your mind. Keep at it and always look forward to something on your list.

REPLY
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